Carnival of MS Bloggers #117

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

Disney World, Jack Osbourne, a Big of Luck, 
and Doctors Beyond Reproach?

Relenting and Renting
by Laura at Inside MyStory

Never do I want to be constrained to a wheelchair.  Yes, I know, neither do you.  None of us do, but living with Multiple Sclerosis, it is a possibility that isn’t hard to imagine.  I took a trial run at it last week and came away with a renewed appreciation of being ambulatory.  It was vacation week, and I had agreed to go to Orlando and the Mouse World with our son and his family.  The thinking was being late in May, the weather would still be reasonable.  So much for our thinking – there was some flaw in the plan, because Mother Nature cranked up the thermostat and we had temperatures in the 90’s every day.

Heat sensitivity  is a fairly common problem for people with MS, and I am no exception; the warmer my core temperature becomes, the less cooperative are my legs.  Keep me in that  type of  stifling heat Florida was experiencing and I quickly resemble Quasimodo and his walking gait  – step, lean,  drag, shuffle.  Repeat.   The hotter I am, the scarier the MonSter in me looks.

We planned on five days in the assorted parks and thought we had developed a reasonable game plan.  However we didn’t take into account the unusual early season crowds and did I happen to mention the heat?  The money was already spent for the tickets, the granddaughters were being cooperative and so excited to be in the Kingdom that I had no choice but to forge on.  The answer to getting through the finals days was something I had already thought of but had hoped to avoid –I relented and rented.  A mere $12 a day and anyone can rent a  wheelchair for getting around the parks.  There is even a multi-day discount so I put down my plastic and paid $20 for my own wheels for the final two days of our trip.

Except for an occasional push down a hallway at a hospital, I’ve not been confined to a wheelchair, and especially not in the midst of an excited, hot, sweaty crowd, all juggling for their own spot in line or place on the curb.  My adult children and husband traded off turns pushing, but my daughter did the yeoman’s share of the work and she got the workout with the stop and go, up and down aerobic nature of wheelchair pushing.  The height of the chair handles appear to be made for people who are less than 70 inches in stature.  My family is tall, and each one of them had to stoop slightly to push the handles.

I’ve joked many times with my husband since my diagnosis with MS that I need to work out more so I can be prepared to haul my own ass  around in a wheelchair, and I learned that is no longer a joke;  I could barely budge the wheels with my own arm strength. I’ve also talked about the need to lose weight, so it wouldn’t be such a chore for others to wheel me and this trip made the importance of that more evident than ever.   But mainly, just like I am sure everyone with MS desires, it was a good reminder that I want to be in control, and there is no way I can do that when someone else is doing the pushing.  It didn’t take me long to declare to my family that if there is ever a need for a full time chair, it will have to be an electric one that I can propel on my own.  I will make them take responsibility for that choice and blame it on the fact that they are horrible pushers and each one of them clipped more than one person in the heels as we made our way through the crowds despite my warnings that they were too close or too fast or too,  too,  too whatever.  This was from my family who regularly gripe about the seniors in the grocery story hitting into them with their food buggies.

People who regularly use a wheelchair talk about the view from that height and I can tell you it isn’t pretty.  In a large, sun baked crowd, it is even worse.  I could see eye-to-eye with my 7 year old granddaughter, but the body parts I saw on most everyone else was something you would hope to avoid.  If the sun didn’t bake my eyes, some of the views certainly threatened to blind me. Goodness, do these people not know what they look like below the neck  and especially the belt line?

It was a humbling experience to set aside my pride, take a seat, and be dependent on others to get me through the 10 hour days of amusement. While the others went off to tackle the thrill rides, I sat in my wheelchair, entertaining my 18-month old granddaughter in her stroller and couldn’t help but feel a tad bit sorry for us both that we were left behind, even though I have never been one for dips and spins and turns in an amusement park and she was not so excited with many of the rides we did manage to do.  But we made the best of it – we had our laughs, danced a bit to the music, and made our own fun and I appreciated the alone time with her. even though we were surrounded by thousands of other people.   Like everything else with MS, perspective factors in a major way as to how to deal with the daily differences.  Being in a chair, albeit voluntarily and for a few short days, gave me  new perspective and renewed motivation to not relent to my MS.

Jack Osbourne Has MS

by the MS Blogosphere

Did you read the news or watch the TV interviews discussing the recent MS diagnosis of Jack Osbourne, son of Sharon and Ozzy Osbourne? More than 100 articles have been written and shared on websites since the public announcement was release the past Sunday evening.  The MS blogosphere has also discussed the news.  Here is a round-up of interesting posts:

• Jack Osbourne, Newly-Diagnosed with MS: Celebrity and Disease Awareness by Lisa Emrich at MultipleSclerosisCentral.com 
• Celebrities with MS: We Need More of Them by Mitch at Enjoying the Ride 
• Welcome to the Club, Jack Osbourne by Laura at Inside MyStory
• you've got more than money and sense, my friend by Swisslet 
• M.S. is B.S. by cubanrick at mylifeonMarS
• MS in the News by Jodi at Jodi Bean's Blog
• Adjust Your Underwear by Thanks: Management
• Osbourne's MS Discovery by Simeon at Suddenly MS
• Just Wondering and Jack Osbourne by Life Can Be Simple

The Full Story

by Judy at Peace Be With You

A good attitude,

success may depend on it.

So is being real.

I am no fool, see.

I know crap can just happen,

good person or not.

One can only make

the best of what life offers

and hope luck shows up.

Now Doesn't This Dunk Your Hat In The Creek.....

by Thomas of BiPolar, MS, and still as handsome as ever

OK, before I begin, take a look at this piece of information here. That's fine, I'll wait. HmmmmHmmmhmmmm. Oh, good. Now in the spirit of sharing, I'd like you to know that that guy is my psychiatrist. Or was. Or still might be. I'm not sure.

First, I freely admit that everyone is presumed innocent before proven guilty. However, I always did wonder why there was a very large amount of turnover in the office. Last few years have been tough for jobs, I am aware, so I did wonder why so many young ladies were in and out of the place, unless incompetence reigned. But basically I paid my co-pay, sat in the chair, filled out the forms, and met with either the Doctor, or one of his associates. Before the associates all disappeared.

Aside from possibly having a serial killer employed, and that's the reason they had to move to their new place because there were no spots left for the bodies to be buried, it did cause one to ponder. I see a lot of physicians because of my dual diagnosis (everyone needs a hobby) and it's more than likely that at each visit the same face would greet me and discharge me. Sometimes the face was attached to the same head. There was consistency.

But not at this psychiatrist's office.

Anyway, moving on, you may have noticed in the article that this particular doctor was called on the professional carpet for having "prescribed excessive levels of medication, failed to properly monitor patients and failed to maintain accurate records." These were the alleged charges.

(Read more: http://www.timesunion.com/local/article/Psychiatrist-faces-sex-counts-3628274.php)

Now, this Doctor and I have had no personal problems, as far as I can tell, in that we worked well on trying various medications to calm the bipolar, and adjust to the new challenges of brain lesions from MS. Working also with his associates, we had a good rapport, and the improvement could be visibly seen. And for those who might have looked, this is where the 5 Keys to Mental Health came from (and No. 5 is on its way). If something needed to be changed, it was changed immediately, or if something needed to be added, it was. And I have benefited and am grateful to the practice.

But still....should I go back there? Should I recommend the practice to others?

Everyone lives with their own delusions, even well trained doctors. Within each person is a golden nugget, a true clean soul that shines. It just gets covered with personal crap, and the jewel can not get its light through the mud and gunk of life. The person needs to clean that jewel themselves. And it takes time. This doctor may have some time soon.

Last night I started looking in my health insurance guidebook for another psychiatrist, one that was, literally, closer to home. I've been fortunate that I've had the same doctors pretty much for years, and haven't had to experience the constant shuffling many patients do. In fact, my regular physician retired the same day I did. But as far as I know, none of these folks had any of the issues that are being doled out to my psychiatrist.

So how to handle this? Consider what would you do if you found out a professional individual who helps you balance your disorder/illness/life has not exactly been a shining light to others? Forgive and continue? Forgive and move on? or just move on? I am fortunate that I can.


This concludes the 117th edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on July 5, 2012. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, July 3, 2012.

Thank you.

Comments for this post.

Carnival of MS Bloggers #105

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

Strength, Hope, and Forgiveness in the New Year

Forgiveness and Letting Go

by Kate Wolfe-Jenson of Dancing with Monsters

Whether it's forgiving myself or someone else, I've discovered it's a practice.
I love practice. Have I mentioned that before? Forgiveness is built into practice.

1. I plan to do something. (Intention)
2. I make an effort to do it. (Action)
3. It doesn't go the way I think it "should" go. (Judgment)
4. I let go of my ideas about what should have happened. (Mercy)
5. I reset or re-envision my intention. (Resilience)
6. Repeat.

Watching myself around forgiveness, I have found an unfortunate tendency to get stuck on step three.

I judge. I try to let go, but it really shouldn't have gone the way it did and it's really not my fault, but if I'd only done it differently…

The image that came to mind is of carrying around a stone. I set it down for seconds and then, compulsively pick it up again.

Forgiveness becomes a practice of letting it go and letting it go and letting it go.

What Race Will you Win?

by Dee Dee Vickers

Some days my MS body feels okay -

but other days, in the bed I want to stay.

But get out of bed is a must for me,

cause if I don’t, that’s where I’ll always be.

One side of my left leg doesn’t feel right,

and the right side feels really tight.

But do a few stretches before I arise,

and once I’m up, each day is a surprise.

What challenges will I face walking the pool?

At least 30 minutes of workout is always my rule.

Then home to shower, and “put on my face;”

And now I am ready for the next big race.

Run a race, I think not for me;

but other challenges I soon will see

Paint a picture, arrange flowers in a vase,–

write a poem – these I consider to be my “race.”

We all have a different “races” we face each day;

but stay in bed, those races won’t come our way.

So stiff on one side, ache on the other,

but think of the “miles” we have still to cover.

Yes, it all comes when the sun peeks in at us

and no matter the ills, “just don’t make a fuss…”

The world is our canvas to paint on each day

So get out of bed and be on your way!

Dee Dee Vickers

Georgetown, Texas

January 5. 2012

Untitled

by Natalie of Sunny, With A Chance Of Clouds

To protect a mind too fragile.
And determined by those misguided,
There is a purity that should remain unaffected.
If innocence and love could be spared.

And even though good intentions are meant,
The disadvantage comes to the one.

To become shielded,
Is no escape from that which can not be erased.
One shielded remains confused.
And is convinced truth must be avoided.

One shielded remains convinced...
A running away from any hints of truth is a benefit.

Unfortunate are those forever troubled.
Running away to shelter themselves,
A lie to comfort.
When truth is not enough,
Or which truth hurts too much?

You Can't Be Too Strong

by Marc Stecker of Wheelchair Kamikaze

One of the great paradoxes of dealing with MS: it's a disease one of whose hallmark symptoms is weakness, yet it demands the utmost strength from those dealing with it. From the psychological impact of the debilitating nature of the disease itself, to the shifting landscape of compromises and adjustments the patient must make in an attempt to maintain some semblance of normalcy, to the frustrations of dealing with an often maddening medical infrastructure, to the well-intentioned but misguided efforts of friends and family, to the sometimes heart wrenching indifference of the world at large, MS presents hurdles and challenges that require a measure of fortitude, grit, and endurance that most suffering from it never imagined they possessed. And yet as a group MS patients soldier on, displaying quiet courage and the hearts of lions.

Those suffering from the relapsing forms of the disease must deal with an illness ever lurking in the background, waiting to strike once again and leave them reeling. When each new attack finally subsides, often left behind are lingering symptoms, some weakness here, a little cognitive dysfunction there, distressing calling cards serving as permanent reminders that, despite all outward appearances, trouble resides within. Patients bestowed with the wonderfulness of progressive disease get to experience the pleasure of watching themselves circle the drain, day by day, month by month, year by year. Like the gradual shortening of days from July to December, the change barely noticeable on a daily basis but quite dramatic over the long haul, the disease creeps along an almost imperceptible pace, molehills becoming mountains with the passage of time. The slow but steady drip of the disease can lull one into to a false sense of security, until the guttural realization strikes that some physical action done without a thought only last year has now become cumbersome at best, impossible at worst. Yes, you can't be too strong.

Despite the obvious mettle needed to meet such challenges, many patients castigate themselves for their inability to withstand the ravages of the disease, disgusted with the fact that sheer force of will cannot beat back the onrushing tides. I have a close MS friend who every day fights through crippling spasticity so excruciating it often literally brings him to his knees but still manages, using a variety of disability aids and mobility devices, to put in his day at the office, sometimes forced to drive by using his arm to physically lift his leg on and off the gas and brake pedals (not recommended, by the way), compelled by his overwhelming desire to provide for his family and not give in to the disease. By day's end he can barely make it back into his house and onto the couch, scarcely able to lift his head, but instead of acknowledging his extraordinary efforts, he beats himself up over his perceived lack of toughness, his powerlessness to simply put a stop to the beast that so insistently ravages his body.

I recognize this same tendency in many of the patients I'm in contact with, and at times in myself. I put off the purchase of a power wheelchair for far too long, unwilling to acknowledge my tremendously obvious need because of the complicated psychological interplay of ego, self-image, and sensitivity to how I might be perceived. I sentenced myself to house arrest in a foolhardy effort to maintain an inner illusion of strength, when in fact true strength was only achieved when I finally gave in and reconciled myself to my need and situation. In a kind of mental jujitsu, what I thought was strength was actually weakness, and in turn, the very symbol of weakness, the wheelchair, became testament to a moment of strength when I finally let go and accepted my new normal. Yes, you can't be too strong.

Apart from the strength needed to deal with the disease itself, navigating through the labyrinthine and often counterintuitive tendencies of the modern medicine machine can test the determination of even the most valiant among us. Instead of making things easier on those suffering from chronic disease, it sometimes seems like the deck has been intentionally stacked against us. Trying to make sense of the never ending stream of research and theories about the disease can be mindbending. MS is autoimmune! MS is infectious! MS is caused by faulty veins! It's all the fault of genetics, toxins, vitamin deficiencies, dietary imbalances! Why not throw in out of balance humors, or unfortunate astrological alignments? Does anybody know what the frack they're talking about? What seems crystal-clear one minute is thrown into doubt the next. Up is down, down is up, and all the while I still can't use my right arm and leg, dammit!

The human tendency to become emotionally wedded to a particular idea or orthodoxy often pits patients against patients, in never-ending circular arguments that ultimately may only serve those who are all too willing to make a buck from our compromised circumstances. We must deal with pharmaceutical companies mandated to be more concerned with the bottom line then with patient well-being, and with doctors who are very often under their sway. Never is it more evident that modern medicine is a business than when you realize that most of the MS research news is reported on the financial pages of the newspaper. Desperately searching for something, anything to hang our hope on, we can be easy prey for practitioners of "alternative" medicine, who may be charlatans or saviors, often indistinguishable when cloaked in the fog of the ongoing battle and blinded by increasingly desperate circumstances. The constant clutter of contradictory and conflicting information can seem impenetrable, yet precisely because of this information overload it is imperative that we attempt to keep ourselves informed and clear headed, in order to self advocate in an environment that demands it. Yes, you can't be too strong.

We suffer through the indignities heaped upon us by miserly insurance companies and incompetent practitioners. Can there be a more surreal experience than having to fight with an insurance company drone to try to get an approval for a drug that has the potential to kill you? When I finally capitulated and agreed that I needed a wheelchair, I was greeted by wheelchair vendors who quite blatantly tried to pawn off products that obviously did not suit my circumstances but would do the most to fatten their commission checks, and by insurance company rules and regulations clearly designed to win a battle of attrition in the expectation that a needful patient will simply weary of the fight and take whatever is offered. In order to get a chair with qualities that would enable it to hold up under the rigors of the streets of NYC, I had to repeatedly appeal insurance company decisions, and to whom do those appeals go? Why, the very same insurance company, of course! After months of constant screaming battles, and with the help of the physical therapy staff at my neurologists office, I was finally granted an approval for the appropriate chair, a device the thought of which, at the time, left me slightly nauseated. It might have been easier to try to part the Red Sea.

In closing, I'll relate a story that another dear MS friend of mine recently told me. She requires home health aides to help her through the day, and a few weeks ago asked one to fix her a can of soup. My friend directed the man to the cupboard that contained the soup can, and to a drawer that held a good old-fashioned manual can opener, the kind that clamps to the edge of the can and then opens it  through the action of the user twisting a rotating handle. The aide picked up the contraption and held it in his hands, stupefied. Somehow, this middle-aged man had never before even seen such a can opener, a device I believe I learned how to use when I was about five years old. In startled disbelief, my friend had to instruct the aide, in step-by-step fashion, exactly how to operate the befuddling instrument. When he was done, the aide explained to my severely disabled friend that being a home health aide was only his "hobby", and that he was a financial planner by profession! Given the bang up job the financial wizards have done with the world's economy, it's little wonder a manual can opener fell far outside this man's power of comprehension. Geez, you think the guy might be better off taking up birdwatching or stamp collecting, benign pastimes in which his gaps in rudimentary knowledge might not negatively impact the day of a sick person?

Honestly, you can't be too strong…


This concludes the 105th edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on January 19, 2012. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, January 17, 2012.

Thank you.

Comments for this post.

Carnival of MS Bloggers #102

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

Thanksgiving, Gratitude, and Faith

Reflecting on Abundant Beauty

by LauraX of Shine the Divine

It has been a week of gray skies, and gray emotions. Looking back and reflecting on these photos from October, the bright blue sky, reds, golds, greens and browns lifts my spirits. I'm so grateful to live in a place abundant in beauty.

Loved Ones

by Judy of Peace Be With You

A loved one’s presence

provides prized companionship

and valued support.

Buoyed by precious love,

one’s spirit takes flight and soars

past stressful moments.

Though hard times exist,

a sense of kinship prevails.

One is not alone.

Wait a Minute

by Mary of Travelogue for the Universe

Wait a minute,

just a slice of time,

does it look like a pickle slice?

Wait a minute,

catch your breath,

can you hold it,

in your hands?

Wait a minute,

did you ever hear,

"Wait a minute,"

and it really meant to

"stop?"

Wait a minute,

60 seconds,

how far does Earth travel

in that time?

Wait a minute,

adult time out,

wait a sec is

another way to say,

Wait a minute,

or a second,

take a moment,

for a change.

Our circumstances have nothing to do with our happiness

by Michael from Perspective Is Everything

I wrote this more than three years ago and came across it again recently. In today's world, it seemed appropriate to publish it again. I hope you think so too.

Sick or healthy. Rich or poor. Thin or fat. Tall or short. Curly haired or bald. None of it matters when it comes to waking up happy everyday. What does matter is gratitude and perspective.

What makes a man rich? It is not money. There are plenty of poor people – “economically challenged” – that feel wealthy in ways that are beyond their wildest dreams. They are ‘loaded’ with family and friends, rich in experiences, and participate in life like tycoons. They are showered in immeasurable riches of making a difference to someone and to the world in which they live. These are the people whose vocabulary does NOT include phrases like “I will be happy when…”, or I would e happy if…”

These people know that there are two keys to happiness. Those keys are gratitude and perspective and they go hand in hand.

Gratitude comes from the recognition of just how much you already possess. Gratitude is the opposite of taking things for granted. The challenge for most people is that they don’t know what to be grateful for or where gratitude begins. There are hundreds of items on my list. Below are some of my favorites.

1. Eyes to see and read
2. Ears to hear and listen
3. Arms to hold. Hands to touch
4. Mind to think and understand
5. Heart to feel and care
6. Roof overhead & bed to sleep in
7. Food to eat and tongue to taste
8. Friends to care for & care for me
9. Family to love & spend time with
10. All of my good health. (Other than my MS, I have a lot of good health that I don't take for granted.)

These are all items that you can’t buy and that cannot be taken away from you. Even if I lost one of these, say sight or hearing, there is still much to be grateful for.

Recognizing the value of these assets is a matter of perspective. What’s your perspective? Where does your gratitude begin? Just how rich are you? It is my hope that if you are reading this, you are already a very wealthy person.

Participate. Make a difference. Live a life that matters.

A Problem of Faith
by Kim of Doc, It Hurts When I Do This...

Neurological diseases are a matter of science. They are measured and they are measurable, recipes so nuanced that had they been capable of being reproduced by gifted chefs, it is easy to imagine that Julia Child might have retired much sooner had she bungled early attempts to recreate them at Le Cordon Bleu.

Multiple Sclerosis, for example, involves a complex batter of CNS inflammation, brain and spine lesions, axonal degeneration, a certain number of oligoclonal bands, various clinical anomalies, fatigue, phantom pain, optic neuritis. The recipe is not exclusive; other diseases share some of these ingredients. Lyme disease, PML, Transient Ischemic Attacks, Diabetes, bone and blood cancers, atherosclerosis, migraines, Fibromyalgia, thyroid diseases, herpes zoster varicella, Parkinson’s. Think of how many recipes use eggs, milk, flour and butter. The light-weight chef might easily set out to make a perfect cheese soufflé and wind up with cheese bread. The dish might look and taste like a soufflé, but only the sophisticated palate of Jacques Pepin could vet this concoction and advise the staff as to whether today’s special is soufflé de fromage or pan de fromage.

The palate of a gifted neurologist can usually vet a cluster of neurological symptoms, evaluate the location and shape of lesions, count the oligoclonal bands in the spinal fluid and compare them to those in the blood serum, review the patient’s history of probable flares. The criteria for an MS diagnosis are quantitative as well as qualitative: four o-bands, three lesions, two flares. The degree of disability is measured by numbers on the EDSS, the number of new lesions and their sizes are measured, the number of flares is measured, and the speed of electrical impulses from the eye to the brain is measured. It is science and it is measurable, which suggests that, after a diagnosis is confirmed, it continues to be measurable. And if it is measurable, we assume that the measuring will continue to yield new epiphanies. We assume that these epiphanies will support the narratives we speak to ourselves about how to live.

One narrative is that taking medication will help us live better. The neurologist whose palate identified the sour taste of MS recommends a sweet and protective dressing of disease-modifying therapies. These recipes, too, are science. They are measurable. Their mechanisms have been studied and the dosages have been tested in FDA trials. Interferons, glatiramer acetate, natalizumab, fingolimod. Each has its way of preventing T-cells from damaging myelin. Clinical trials show a 30 percent reduction in relapses compared to placebo. The narrative we tell ourselves is that if we take these drugs then we will have 30 percent fewer relapses. The narrative bespeaks a slowdown in disease progression over our lifetimes. We assume that our improvement will be measurable and that these outcomes will support the narratives we tell each other about how to live well with MS. We do not need to have faith, we have science.

But this is not true.

The more we learn about the therapies, the more gray areas we encounter. Clinical trials, for example, showed a 30 percent reduction in relapses compared to placebo. But this means that the 600 people who took the drug had 30 percent fewer relapses than the control group of 600 people who took a sugar pill. The trial subjects all had a history of at least one flare per year. Their histories of frequent relapses made their outcomes easier to measure.

In real life, we all relapse at various intervals. Our relapse rate on any of the disease-modifying therapies will not reflect that of the trials. If we have a history of relapses that occurred every four or five years, we will have no way of knowing whether the drug is working until many years have passed. We know that relapses follow no particular pattern. The attacks are random. We have no way to measure the number of relapses that might have been had we not taken the therapy. The drug maker asserts no claim that the therapy will actually work at all. If there is a faith narrative within the research community conducting a trial, it is part of the method, the hypothesis that must be tested and then quickly abandoned if the measuring fails to support it.

Science extends no faith narrative to the patient community. Not faith, but rather, hope. We eagerly pick up on the hope narrative. Hope for a cure, new hope for experimental therapy, renewed hope for a cure. We hope that our new therapy will slow the progression and buy us time until there is a cure. HOPE 4 MS is the most common name for MS support groups. Hope can distract us from the breakdown of other narratives. Taking my medications will make my life better. The more compliant and knowledgeable I become, the better I will be, both physically and emotionally. I’m feeling worse than ever, but I have hope that a better therapy will come along.


Belief in a higher power offers both hope and faith. Religious narratives are useful and comforting. If I remain faithful to God, I will be rewarded. I pray to God and he hears me. Doing good will put me in favor with God. I prayed that God would restore my vision and after four years of blindness, he blessed me by restoring my eyesight. The most pious among us acknowledge no gray areas. Your prayers will be answered. If you give yourself to Jesus you will be saved. Tragedies happen for a reason; God wants us to learn something important from them. Evil is always punished; good is always rewarded.


The positive thinking narrative works similarly. It is the single loudest narrative in American culture. If I think good thoughts then good things will happen. Stay positive. A happy person is a healthy person. If I believe strongly enough that my cancer will be cured, then it will. The premise of positive thinking is denial. I’m going to beat my Stage IV cancer, I don’t care what the statistics say. Depression can be avoided if people would just get a positive attitude. I never get sick because I don’t believe in disease. It’s mind over matter.


When we speak these narratives to each other and to ourselves, in what, exactly, do we have faith? When our faith breaks down, what is it that makes us fall apart?

The core of our faith is in the belief that our narratives are true. Ten million people can’t be wrong. We lose our minds when we fear that something we’ve heard and repeated so many times was only wishful thinking.

The responses to this breakdown are many. Depression, drug and alcohol abuse, suicide. But the majority of us respond with denial. For most of us it is a necessary choice. The devout Christian doesn’t abandon her belief in Jesus for very long. Religion is useful and comforting and loopholes abound. God works in mysterious ways. Yes, of course, she says to herself, there is so much I don’t understand. She begins to feel better, her terror all but forgotten. Many of us can abandon the untrue narrative and embrace a new one, something that might be true. Copaxone wasn’t working after all, I’m going to stop. But Gilenya has a better relapse rate, this might be the one.


The bravest souls among us are also the boldest. Not only do they abandon the narratives they find false through a crisis, they regularly analyze their narratives and willfully cast out those they feel no longer serve them. They search for no substitutes. They are not unhappy people, only brutally honest. They can live in the moment and say what they observe, knowing that everything could change the moment they finish a sentence. They need no god or hope or platitudes to feel secure. Security itself is a false narrative.

Multiple Sclerosis constantly challenges our life narratives. Disease happens to other people, not to me. I’m going to be one of that 33 percent of MS patients who will never need a wheelchair. I’m not having a flare, just a bad day. I’ve had MS for twenty years and never had optic neuritis, so I’ll never have optic neuritis. I’ve taken Avonex for nine years, so this new problem with seizures must have been caused by something else.


The patient with chronic disease waits for science to catch up to the hope. Whether we embrace, abandon, or modify our narratives is a matter of coping and it is very personal. Our relationship with science is circular; through our life narratives, we maintain our faith that science will triumph, and this brings us hope. Science feeds our hope. The more it advances, the simpler the recipe becomes. Less is more. This new cancer treatment kills only the abnormal cells.

The murmur of new MS narratives can already be heard—the rest can be easily imagined. The MS treatment of the future will be individualized; we’ll know the person’s bio-markers, her blueprint, if you will, and deliver the two or three designer molecules to the right spot and presto, she’ll run around the block again. It’s so simple. Why didn’t we see it before?


This concludes the 102nd edition of the Carnival.  Thank you for making this such a wonderful community online.

The next Carnival of MS Bloggers will be hosted here on December 8, 2011. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, December 6, 2011.

Thank you.

Comments for this post.

Carnival of MS Bloggers #101

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

Unexpected Surprises

Sticks

by Laura of Inside MyStory

Have you ever done something that you felt was a pretty useless effort but you did it anyway because it was the right thing to do, never dreaming that you would get a better outcome than you should dare hope for?

Fourteen years ago I took the time to plant three white pine saplings in the back yard.  These were those free trees that are given to school children to take home and plant as part of Arbor Day celebrations. Trees is a liberal use of the word, they barely looked  like  trees, they were more like a piece of greenery that could be used in a floral arrangement than something that should be planted; a  little tuft of pine needles on the end of a stick. The fine roots at the end of those sticks were barely visible.

Rather than ignore them in their sad state, wrapped in a plastic bag, I followed the attached instructions and dug shallow holes in the back of my yard  for these three sticks.  Much to my surprise, all three of them took root.  Had I known they would actually grow, I would have planted them differently, but I had assumed they wouldn’t thrive in my care and dug three holes about three feet apart .

A few years pass, and to my surprise all three sticks survived but  I had  planted them too close together, and told a good friend to come and take the small one away to her yard, to give the others the room to grow.  She made the move while I was at work, and to my dismay she had taken the wrong tree.  Instead of the runt of the group, she had removed the middle sized white pine, a tree that had already grown to  a height of over 6 feet.

That middle sized  tree didn’t survive the shock of the move to her yard and quickly lost all its needles and was once again just a stick, just a lot taller than its humble beginnings.   The 2 foot runt was still in my yard, in the shadows of the biggest tree, which was quickly hogging all the sunlight and water.

Looking out in my yard today, I can still see that runt, struggling to grow in the shadows of the other sapling, which has now reached a height of almost 40 feet and is a magnificent specimen.   The runt is merely a dwarf version of the big tree, and has the same perfect shape in all of its now  8 foot glory.

They were the same when they went in the ground, planted in the same location, and given the same care.  I could not have projected this surprising outcome or tell you why one thrived while the other remained fairly static.

I didn’t expect these sticks to grow, but it provides me a reference as to how sometimes I go through the motions anyway of what is expected, and I end up being pleasantly surprised.

Looking at these two trees remind me of why I continue to take my daily disease modifying drug.  I’m not sure that those daily injections will ultimately make a difference in the course of my disease.  But I keep planting that needle, just in case I’m wrong. And I’m open to being pleasantly surprised.

A Letter

from Travelogue for the Universe

from the clinic,

nearly left it

there,

on the table,

by my diary,

of my shots

i have had

for

4 years

now,

but the letter,

had a feel there,

out of place,

i had a

feeling,

it was not a simple

letter

but a message

that

my study

will

end soon.

I told

my patty,

my sweet voice

who monitors

my

progress,

that

it was

weird,

being told after

4 years

that this will all

change,

somehow.

She said,

everybody felt

that way.

Seemed like I was just getting used to it,

having more faith that this is the right

regimen.

Knowing the

funding

has a lot to do

with

well,

everything,

and politics,

is right up there too,

and when we feel

powerless,

it is because

we

are.

stay tuned, you know as much as i do.

will find the results of my study in January

and discuss next steps.

4 years no exacerbation,

hope they keep me on what i am on,

whatever that turns out to be.

mary

Secondary Progressive MS, When MS Retires

by Diane J Standiford of A Stellarlife

I used to think secondary progressive MS was the worst thing that could happen to me. I mean, after all, if you start at relapsing remitting, the progression to secondary is the end of the line---all downhill from there. Well, that may be true, but I'm not living it yet. In fact, I feel better than I used to.

Back in 1990, after my initial diagnosis, my hopes were on being that 50% who never would rely on a wheel chair. It seemed, for 15 years that I had made it! But, alas, here I sit, power chair at my side---always. Oh well, you takes your chances. I refuse to accept the whole "secondary progressive now you are just a downhill headed snowball" thing. Um, I don't roll like that.

In truth, some functions have come back that I thought were gone forever. Plus, there is a certain tranquillity with not waking up each day and finding a relapse starting. As my neurologist asked me 5 years ago, "When was your last relapse?" I couldn't remember, in fact, without all the blog and Face book reading I do, I'd probably have to really think hard to recall what they were like. Much of the uncertainty of MS is now gone. Here I am. Being 54 leaves me with more health issues to worry about than MS.

Like cancer. Had it once, don't want it again. Liver problems. Had them once, don't want them again. Diabetes runs in my mom and a brother (both of whom I look just like), don't want that.

Then there is mom's Alzheimer's---like a shadow that I see every so often, hanging around...certainly don't want that. My point is that MS has crept lower on my health concerns list. Secondary progressive can do that for ya. It has shown certain limitations, but I will always continue to try and erase those. Bottom line: there is so much more I CAN do than I can't do. My focus is clear for the goal of quality of life.

Back in the '90s, I was working at a job I loved, walking hills of Seattle every day, driving, but my quality of life was pretty sucky. I would never have admitted that then, because who KNEW where I might be in 10 years, but now I can say---it was really difficult.

I feel bad for people diagnosed with MS so early now, I do. Those years BEFORE my diagnosis, almost 8, where today a MRI would have pegged me, were terrible and scary. But they passed and newly diagnosed people now seem so freaked out! (As I would have been. I would never have gotten my job with the city that afforded me such great health benefits. I might even have headed back to UGH Indiana. So MANY things I never would have felt able to do, chances I would never have taken.) Without a CURE, early diagnosis just seems more of a trouble maker.

If I found out today that I will get Alzheimer's---what good will it do me? NONE. I already play all the brain strengthening games, eat the healthy foods, exercise; not a future I'm worrying about.

Secondary progressive MS. SPMS. There are worse things to have.


This concludes the 101st edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on November 24, 2011. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, November 22, 2011.

Thank you.

Comments for this post.

Carnival of MS Bloggers #100

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

Living Fiercely, Sexy Limps, S and M or MS?, Acceptance

Telling my Mom

by silver lining of ladeedah-msandlife

My first thought when I got diagnosed with multiple sclerosis in March was, how am I going to tell my mom - my loving, high blood-pressured, easy to stress out mom? I want to keep her calm and her blood pressure low.

She knows I have medical stuff going on, I had to cancel my Spring Break plans to go home because the doctors said I am not fully diagnosed although it looks like M.S. and I'm not medicated also travel can be stressful on M.S. They want to do another MRI. So she's waiting for more medical answers about what's going on with me. Then I got the final diagnosis.

I was nervous about telling her. She's gonna be shocked and upset, it doesn't run in the family. This will be weird news and difficult to share.

One thing about MS it messes up my memory and I get words mixed up often. I told a friend the doctor prescribed me Aveeno. After her laughing hysterically she corrected me, “Aveeno is bath soap, you mean Avonex.”

When I did tell my mom I was prepared with a friends suggestion to tell her all the help that's provided and the good things. That will help keep her calm. My friend and I practiced and I got to a point where I felt that my delivery of the news would go well. I call her. Deep breath, I can do this. I had a pleasant, calm tone, made fun small talk for awhile and then decided I was ready to calmly tell her.

“Now I finally know why I'm tired all the time and keep running into walls. I've been diagnosed with S&M”...shocked I realized what I said.

The mind has the ability to go 100 miles an hour in analyzing, calculating, weighing ratio's, outcomes and carefully planning how to get through a crash landing like this. The mind can think multidimensional novel chapters in nanoseconds. I ran through several options of how to correct what I said without drawing attention to it upsetting my Southern Christian, quiet mom who sings in the church choir.

Gosh, out of all the people I make this mess up to. She was so quiet about it I thought, whew, she doesn't know what S&M is. I decided to correct it by saying the things I practiced with my friend and end the sentence correctly in same calm tone rather than correcting my mistake which would bring attention to it and then having to talk about cognitive challenges with M.S.

So I continue, “and it's OK. There are support groups, community and lots of help with ” [remember, remember, think, M&S runs through my head, then I mentally run through it again dropping the &. ] “M.S.” It's amazing I could do that much thinking while saying the sentence, so no pause before saying the word. I said it smoothly.

Now what can I tell her next, oh the books I have read about M.S. “There are many informative books at the library that talk about cures, treatments and living life with it.” Then suddenly I remember a scene from the original 9-5 movie when the newly divorced character played by Jane Fonda sees her x husband and to show how much she's changed and is a different woman, she states “...now I'm into M&M's,” not really knowing what she's talking about.

Remembering this scene makes me want to laugh. I feel it in my throat like a slight vibration, I swallow and try to suppress it. In the suppression of laughter and continuing to speak my voice gets tight and a little higher pitched. I can feel the tickle of laughter tempting my throat as I try to continue with my calm soothing attempt and say, “there are friends, people to call and web sties.” My voice is noticeable different. What if she thinks I'm really upset and about to cry. Darn my plan to keep her and me at this point calm is not going as smoothly as I practiced with my friend. Trying to suppress the laughter causes me stress, telling her I have MS is stressful and stress is bad for M&M's...I mean M.S.

OK reclaim my calmness and confidence that this is going OK.

“My life isn't over, it's just changing. It will be OK.”

If you could see past disability

by Mary K. Mennenga

To see the person

Who isn't willing to quit or given up

On living life, hope and love

Life is about

Making the most out of what I've got to work with

It's not about what I can no longer do

Instead it's learning new ways of working within the limitations

Living life has brought to all of us

Pride is a force that will need to be dealt with

It's one of the things that can defeat anyone

Remember I'm are still in control of my choices

Will I make mistakes of course that's how most learning gets done!

All I ask is your understanding that

If the reason you're helping is because you think you have to?

That kind of support feels more like pity to me

Instead of being something you want to do with me

Honestly pity is just another form of guilt

That has nothing to do with me

Walk This Way

by Kim Dolce of Doc, It Hurts When I Do This...

Long before we girls leave the crib, we sense that boys watch the way we move.

Once we become ambulatory the game intensifies. Puberty attaches language to this preoccupation as girls learn whether guys are leg men, butt-watchers, or hypnotized by hips. In adulthood, women discover the power to influence an admirer with a simple movement. We choreograph our own signature dance. Fully in control of our youthful bodies, we emulate the panther, the gazelle, our favorite Motown group, or in a goofy moment, a decrepit great uncle.

Developing MS is a real game-changer. When I added foot drop to my choreography, I felt clumsy and unattractive. Augmenting my routine with a cane was the finishing blow; a cane did well by Fred Astaire and July Garland, but I don’t sing “Swanee” or tap dance on ceilings. I gave up on grace and worried about tripping or falling. My dance morphed from jazzy Gwen Verdon to Chevy Chase doing Gerald Ford. Convinced that men observed this with either sympathy or disgust, I abandoned my desire to be desired.

One day, I noticed my husband, Mark, standing behind me beaming lasciviously.

“What are you looking at, you silly man,” I asked.

“You,” he said. “I love the way you walk.”

“Limp,” I corrected, “I don’t really just walk anymore.”

“It’s a geisha two-step,” he observed. “You take these feminine little mincing steps and then swing one hip. It makes your butt look great. You’re so hot.”

I peered suspiciously at his face, searching for irony. But he was still looking at my ass with that unmistakable gaze of desire.

He seemed to sense my overall low opinion of my physical affect in society. “I see how men look at you when we’re out in public,” he went on. “They can’t take their eyes off you. I know how men think, honey. You don’t even see it—and that’s the beauty of you.”

The geisha two-step. I do still have a dance. Maybe not the one I was hoping for, but it’ll do.

connection…

from erin jennifer griffin

after a rough week my friend, Lori, reminded me about patience today.

I realized this morning that I have been denying patience with myself.

a lot.

all the time, in fact.

Lori says “the opposite of patience is anger.”

that caught my attention. fast. goosebumps.

I started mulling this over and realized that I have been angry at my body for most of my life: there has always been something wrong with some thing God gave me.

I can count on both hands and feet the number of things I don’t like. from my nose to my toes.

and now, there’s even greater reason to lash out at my physical body: it hurts, it buzzes, it won’t move the way it used to move…or the way I want it to move.

my body is fighting back. at me. finally. and in a big way.

wow.

need to do something about this. my husband always asks me how I can see beauty in everything, everyone around me, in people I don’t even know, but not in myself?

I don’t have a good answer anymore.

intentions for the week: become my own thought watcher. interrupt when necessary. rest until it’s time to play. play until it’s time to rest. repeat. get out of God’s business.

Living Fiercely

by Nadja at Living! With MS

I still vividly remember a time during the first year after I was diagnosed where life was colorless-- all just a bunch of "what ifs" and struggle to survive. I also remember talking one day with my then husband, and realizing that I no longer had any real dreams or desires. Everything I did was somehow based in fear. I worked so I could pay my bills. I rested so I could be well enough to work, and I fought tooth and nail just to keep what I had--continually wondering if it was even worth the cost to my physical and mental health. He asked me about my bucket list and I was painfully aware that I didn't even have one.

Fast forward three years from that moment... I find myself in an entirely different state of mind. I work to live, but i don't live to work. I still work hard but I am prioritizing my activities. It can be all work all the time so now I go to aerial dance and fantasize about joining the circus. I have stopped saying no to every invitation and every activity outside of my job. I am about to turn 35 and I have a bucket list that is alive and well. My new priority, having fun doing things I love.

Last night I crossed a new item off my bucket list when I performed my first aerial dance routine. When I came home and looked at the photos, I told my roommate, "I look fierce." I love feeling like a bad ass :) If MS has taught me nothing else, "Carpe Diem."


This concludes the 100th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on November 10, 2011. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, November 8, 2011.

Thank you.

Comments for this post.

Carnival of MS Bloggers #96

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

The Hurricane which is MS

You being you is amazing

by Mary K. Mennenga

When what you can do is stolen from you

The mix of emotions felt are different for each person

That learns their life and all plans made

May need to be changed or at least need a lot of adjusting

The future has become a question mark

What hasn't changed is your heart, spirit and love for life

Your not one to give up or quit when things get tough

Learning it's name M.S. gave you a power over it

Because you knew what it could and would do

M.S. didn't know the kind of fighter you are

You knew the fight was against M.S.

Not you!

What it took wasn't who you are only what you could do

You are much more than just that

Knowledge is a powerful tool when the fighting must be done from the inside out

Having limits isn't something you've had to deal with until now

Handling this isn't easy when it changes

One day you can the next your body fails it's not your fault

You know what the real reason is and it's not you

Getting people to understand does not always happen

Now all plan's made are tentative to limit misunderstandings

This is when we see how strong you are as you battle M.S.

Yet you still manage to take care of the people who love you

Of course you may not see it that way, your looking outward

We are looking in seeing your heart

That is the most amazing part of you being you

Like A Hurricane

by Gracie's Mum

August is usually the hottest of the summer months in Halifax. This year though, with the rainiest and coldest summer in years, we’re only just now seeing August in its true form.

The warm August winds, although great for drying clothes hung on the line, means only one other thing: the Atlantic hurricane season is upon us.

The most famous of them all to hit Halifax was 2003’s Juan.

With only days to go until our wedding, my sisters got on a plane, before the closure of the airport and made it to Ontario just narrowly escaping Juan’s wrath.

The worst hurricane to hit the Canadian Atlantic coast, Juan was responsible for acres upon acres of damage and destruction, including major natural landmarks, provincial parks, and for the death of a rescue worker.

There have been several hurricanes since we have lived here. In fact the year we did move here there was what seemed to be one after the other after the other.

And although there weren’t many that hit land, last year was still no exception.

In August of last year we were walloped by a doozy that left us without power for 2 days.

Not terrible if you are in the city, but in the country, when you have a well supplying your water and the well pump runs on electricity, you better have remembered to fill the bath tub with water to assist in the flushing of the toilet. Also, it doesn’t hurt to fill up on bottled water for not only drinking but brushing teeth. And forget about showering, you just get used to sponging yourself down with tepid bottled water.

Good times.

By the second day of eating all the dairy we could handle in advance of it spoiling in the powerless fridge, we gave up and went out to the pub for food since they were one of the few with power in our area.

As we drove around we saw downed trees, power and cable lines and a lot of debris strew over the streets and yards.

It wasn’t the worst of storms but it was a big one that’s for sure.

Hurricanes, although everyone is aware of the season, are for the most part unpredictable.

Yes, you know if one is barrelling toward you, yes you know how fast it’s approaching and we all know there is even a measuring system to predict its strength and force.

And we know that they’re given names and because of that we’re able to remember how bad some of them have been.

But none the less, the actual damage is unpredictable.

Nobody ever knows if the spindly tree in the back yard that should have been cut down years ago will find itself slamming into your roof or front window. Nobody ever knows how high and damaging the waves will be this time. And no one knows how long the power will be out and if they have enough supplies in case the effects of the storm last a really long time.

And nobody knows why this time they were hit or why they were spared.

Living with MS is much like hurricane season.

All year long.

Nobody knows why some people develop MS while others don’t. Nobody knows why some people have mild cases of relapse-remitting that remain in remission for years.

Nobody knows why some people have faster cycling forms of relapse-remitting. Nobody knows why some with relapse-remitting graduate to Secondary Progressive and others don’t. And nobody knows why some people develop Primary progressive right off the bat.

And nobody has the cure.

And even more importantly, those with any form of MS have no idea when or where the next attack will come and what damage will be left in its wake.

Much like hurricane season, many will be ready and prepared only to be relieved from time to time when not much of anything has happened at all.

Many will face a wrath of nature that no amount of planning could have ever prepared them for.

So what do people who live in the path of hurricanes do?

They live, they breathe, they hunker down for the long haul, they rebuild if necessary only to do it all again.

But very few move away out of fear.

They adapt or die.

So, while I start making longer grocery lists that include canned goods, bottles of water, batteries and candles I am confident in the fact that I too am as prepared as I will let myself be for the next one, which has every chance of being the big one.

And when and if it comes I have but one thing to say.

You better bring it ‘cause you’ve met your match this time.

On The Road Again

by Gracie's Mum

It’s been a long road.

Bumps, hills, sheer drop offs, delays, missed connections, unbearable traffic, and even more unbearable road rage.

And then, then it got a little swear-y.

I’ve been on this road for almost 5 years and a new road is just around the corner.

In October I will go back to work. And my list of goals that I made, what seems like a lifetime ago, in the hospital after my MS diagnosis, will finally be completed.

I have not returned to work since my departure in March 2010.

That is a lifetime ago.

And since going off my first Disease Modifying Drug in preparation for the switch to the new drug I will be taking, I can’t even describe how amazing I have been feeling.

Even in the early weeks of going from three injections a week down to two I noticed a difference in my levels of fatigue, stamina and endurance. Then I switched to once a week, the difference again was incredible. Now, it has been two weeks of being entirely free of that drug and I feel absolutely incredible.

On top of that, I have a house designed to conserve my energy.

I won’t say I feel back to my old self, because I don’t even remember what that felt like.

It’s been a long time.

I have an amazing amount of energy, but not only that, I have confidence where I had none only mere months ago.

A confidence to allow myself to really be me. To live with MS, but to live in spite of it as well.

I’ve found myself daydreaming about long lost goals, finding an increased passion in old hobbies and a want and desire, not because I have to, but because I want and desire, to plan for the future.

To plan daytrips, weekend getaways, family gatherings, parties, and get-togethers with friends.

To reunite myself with my graduate studies, to finish my program and apply what I’ve learned to my current and future career goals.

To have future career goals.

Because I have confidence that my energy levels will not fail me as miserably as they have before.

For years, my head-down-plough-through-this mantra that I rehearsed every minute of every day, no longer seems entirely valid. I won’t forget it, but it’s up there on the shelf that we put things we no longer need right now, but might need one day sooner or later.

I know that I will have MS for the rest of my life.

I know what MS can do without medication to divert its course.

I know now how one of those medications made me feel.

And I have learned from that experience.

I will try different cocktails of medication, exercise, and homeopathic remedies for the rest of my MS ridden life in order to keep this good feeling going.

I need this and my family really needs me back to being me.

And that I can see her, smiling back at me in the mirror, is almost too good to be true.

But to know, to believe that it is true, is even better.

Have a wonderful weekend!

I'm Special!

by Nicole of My New Normals

I see a neurologist to manage my multiple sclerosis. Even though I’ve had this ghastly disease for 11 years now, going to the doctor’s office always leaves me feeing down and depressed. I’m not entirely sure what I expected the doctor to say at this visit, but it was the same old stuff.

Sitting in the waiting room I kept thinking that MS wasn’t in my plans. Those thoughts would usually make me a blubbering idiot. But this time, I remembered some of my own words. I remembered the wonderful comments and support I’ve received both here and from family and friends.

I said before, I am never quite sure what the doctor will say. But that’s a lie. The feeling that I was misdiagnosed is always running in my heart and I thought he’d know. I secretly thought he’d feel that same vibe and would shower a little hope on me. After all, I thought only 2/3rds of the multiple sclerosis population ends up in a wheelchair? What happened to that? I told these statistics to my husband Tommy and he said, “You’re special and make the wheelchair look good.” It’s kind of lame, but I’m a sucker for compliments of any kind.

I thought people, who start out with visual disturbances, like I did, generally do well or at least don’t end up in a wheelchair? What happened to that? Again, all Tommy said was, “You’re special.”

I thought black Americans didn’t generally get this? Well, the gigs up. I’m black and I got it and yes you don’t have to say it I already know I’m special.

Mighty Mouse

 I read an article where Multiple Sclerosis Was Successfully Reversed In Mice. Too bad I’m not a mouse.

AAAGGHHHHHHHH!

Somehow, I feel better but I still need a drink!

"Life Interrupted, It's Not All About Me"

by Chris Tatevosian

Book Excerpt:

When I was struggling, my mood was one of nastiness.  All my actions had become hidden agendas.  My anger and nastiness developed into a learned technique for achieving my hidden agenda.  At one point during my marriage I recall my wife saying that she tried to do everything to please me in an attempt to avoid upsetting me.  Of course, she told me this so that I would be sympathetic and understanding.  As a result, I thought I was being more understanding, but I had also learned that expressing anger was a way of getting what I wanted from her.  I was guilty of angrily expressing frustration and hardship likely resulting from the embarrassment of my physical losses such as strength, energy, and simple motor skills.  Furthering this problem were the larger culprits: my mental and emotional losses, the loss of my self-esteem, and the development of cognitive difficulties.  This behavior became the norm.  In my mind I didn’t recognize my relationship-damaging and selfish behavior because my personal struggle to function was all-consuming of both my mental and physical strength.  I mean, come on, every simple daily task like tying my sneaker, standing up in the shower or holding an eating utensil became an embarrassing struggle.

Whether we want to admit it or not, the damage to our own egos can cause much anger.  Unfortunately, much of it is misplaced anger, and who is the unfortunate recipient of that anger?  I’ll take “my wife” for $500, Alex.  If someone, somehow, had been able to help me recognize I was acting that way so that I could have changed my behavior and stepped out of that “it’s all about me” fog, my marriage might still be intact today.  Having a chronic illness or disability is horrible, tragic, and unfair.  If you surround yourself in that fog of misery and self-pity, you may just be involved in a tragic accident, the result of which will be the tragic loss of your relationship, marriage or family.


This concludes the 96th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on September 15, 2011. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, September 13, 2011.

Thank you.

Comments for this post.

Carnival of MS Bloggers #87

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

cycles in life and hope

In the span of life

It's the middle that matters

By Mary K. Mennenga

Learning your capable of doing something doesn't mean you should

Time teaches us we aren't as smart as we thought

When we become willing to admit this, that's when growth begins

We no longer need to be told what someone else thinks

The answer to our question is

We begin to seek out the answers for ourselves

To the questions that the answers bring to mind

Creating even more answers that need questioning

As we begin to make decisions about what we believe the truth is

Who we are and what's important to us and why

We learn that each choice we make will change

What choices and options are available to us

It becomes a lifelong cycle of questions, answers

Learning and personal growth making decisions and choices

It's a kind of learning that you learn as you go

So don't judge yourself too harshly

This never-ending cycle helps you become

The person you know you want to be

It's a journey that no matter what you do

Still takes a lifetime to finish

Well coordinated
by Toots of Maybe MS Truth

Today (now yesterday) my masseuse commented that my knickers matched my walking stick. Let me explain.

• a) I have had regular massages since suffering a work related shoulder injury many years ago. I wrenched something. It hurt. A lot.
• b) Unusually for me, these particular knickers are patterned with red cherries.
• c) I own a variety of patterned walking sticks. This is one of two recent bargain buys from Timpsons. It is bizarre how excited I now get about buying new walking sticks. Who’d have thought someone my age would get so much pleasure from a pretty stick! Not a euphemism.

I often coordinate the colours of my clothing and, to a certain extent, accessories – earrings, bags, walking sticks. This probably makes me sound far more fashion conscious than I could ever pretend to be.

Loss of coordination was one of the first symptoms to affect me when I suffered the MS relapse that led to my diagnosis. I don’t remember what I was wearing when I went into hospital (in an ambulance) but I bet it wasn’t in any way coordinated. I do remember I couldn’t write properly with my left hand. I am left hand dominant. Left-handed to you and me.

I had also started dropping things. I was already using a stick due to footdrop, balance and coordination difficulties when walking - and when standing or bending down. Sitting seemed to be ok but that doesn’t take a huge amount of coordination.

None of this is unusual for someone with MS but when you don’t know you have MS and these difficulties are accompanied by visual disturbances, extreme tiredness (fatigue), strange numbness/tingling in limbs and crushing pain round your midriff then the loss of coordination is disturbing. It was the midriff pain that landed me in hospital, It moved up to my chest and the out of hours doctor told me I had to phone 999. Best thing I did. Once in hospital I had the raft of tests that led to my diagnosis.

On diagnosis, I was told by the hospital MS Specialist Nurse that the crushing midriff pain, which felt like a far-too-tight twisting belt, is known as the MS Hug. I think of a hug as a pleasant thing. This wasn’t, and still isn’t, at all pleasant.

One of the problems with all my symptoms is that they didn’t/don’t feel coordinated. To a lay person like me, it’s like having a whole jumble of stuff wrong. So yesterday it was good to be told that one part of me was coordinated. My knickers matched my walking stick. I was well coordinated. Very important, I feel, to look your best... in case you get run over by a bus.

Taken off of Tysabri

by Maryann of MS and ME

These are my two grandsons, Alex (8) and Albert (12). They came, along with their parents, for a visit in March. We had a wonderful time with them. Behind them in the picture is the Roanoke River. We were all walking on the Greenways, a very nice asphalt walkway that goes through Salem and Roanoke.

I had MRI scans of my brain, cervical spine, and thoracic spine taken with and without contrast. Following that, I had a visit with my MS specialist neurologist last week. He said there were no changes since my last MRI. However, in a blood test taken the first of March, I tested positive for the virus that causes PML in people who are on Tysabri. Dr. S told me to discontinue my T infusions for now, but to not have my port removed.

Because of my tiredness, sleepiness and fatigue, he is weaning me off of the Flexeril and Baclofen that I had been taking. If my muscle spasms come back and are too painful, I am to start taking the meds again.

He did a lumbar puncture, which was my second in 20 years. There was a problem gaining entry, and they ended up having me sitting on the exam table, with my arms extended over a walker, and my chin tucked into my chest. That opened the area up and the LP was done. I also had to go to the lab, carrying the fluid from my spine, and have blood drawn.

I will also have a sleep study done because I am overweight and I snore. Then, I will also begin Physical Therapy.

That's an awful lot of stuff. Dr. S seems to think I have another disease along with my MS. He mentioned Primary Progressive MS, and he also mentioned Parkinson's Disease. I hope I'm negative for both of those!

We're going to Margate, NJ to celebrate Passover with Arnie's family. Along the way, we are stopping in Philadelphia to visit a friend I met on Facebook. I am so looking forward to seeing Rita in person, along with her little dog Jake. Can't wait to see the family and be with them for the Seder. This will be a pleasant trip for all of us.

My Shoes. . .

by Jodi Bean

I am wearing a pair of shoes.
They are ugly shoes.
Uncomfortable Shoes.
I hate my shoes.
Each day I wear them, and each day I wish I had another pair.
Some days my shoes hurt so bad that I do not think I can take another step.
Yet, I continue to wear them.
I get funny looks wearing these shoes.
They are looks of sympathy.
I can tell in others eyes that they are glad they are my shoes and not theirs.
They never talk about my shoes.
To learn how awful my shoes are might make them uncomfortable.
To truly understand these shoes you must walk in them.
But, once you put them on, you can never take them off.
I now realize that I am not the other one who wears these shoes.
There are many pairs in the world.
Some women are like me and ache daily as they try and walk in them.
Some have learned how to walk in them so they don’t hurt quite as much.
Some have work the shoes so long that days will go by
before they think of how much they hurt.
No woman deserves to wear these shoes.
Yet, because of the shoes I am a stronger women.
These shoes have given me the strength to face anything.
They have made me who I am.
I will forever walk in the shoes of a woman who has MS.

Author Unknown

I changed the last line of this poem to "who has MS." It was written for another use but rings so true for people living with MS. As a social worker and as a person I try not to be judgmental or to make assumptions about people. I often say to myself and/or co-workers "until I've walked a day in her shoes I'm not going to judge/assume." I think it is a good motto to live by.

I don't know what it is like to live someone else's life. Life is different for everyone. Everyone's journey is different. I walk in my shoes on my journey which has been shaped by MS. I can honestly say that it has greatly impacted everything I do and every decision I now make. But my journey is not a sad journey or an angry journey or even a depressing journey. Yes there are bad days and my future health is unknown. But there are also a lot of good days, great days, happy days, time with family, vacations, time with friends, dinners out, sunny days, good books, funny reality tv shows, laughs, drinks, memories, support, love and HOPE.

My journey is filled with hope. Hope that one day I won't walk my journey in shoes with MS. I hope that one day there will be a cure. I hope that I will continue to be strong and happy and motivated. I hope I will never give up the fight against MS.



This concludes the 87th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on May 19, 2011. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, May 17, 2011.

Thank you.

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